​​​STIFF PERSON SYNDROME ~ lIVING FORWARD​awareness, knowledge, hope

Stiff Person Syndrome (SPS) is a rare disease of the nervous system. Progressively severe muscle stiffness typically develops in the spine and lower extremities; often beginning very subtly during a period of emotional stress. Most patients experience painful episodic muscle spasms that are triggered by sudden stimuli. An auto-immune component is typical and patients often have other auto-immune disorders. Symptoms usually begin in the mid-forties. The severe muscle stiff-ness of SPS responds to benzodiazepines. Testing with an EMG (electro-myogram) needle will assist the diagnosis and testing the blood for anti-GAD (glutamic acid decarboxylase) antibodies (if present at very high levels) will confirm the diagnosis in the majority of people with SPS.

SPS is extremely rare. Although it is not possible to determine the exact prevalence, it may occur in fewer that 1 per million. The disease is more common in women (the ratio is 2 women for every man effected). There is no predilection for any race or ethnic group. There is an association with diabetes and perhaps over half of patients with SPS have or will develop diabetes. Other autoimmune diseases have been found in association with SPS, for example: thyroid disease and vitiligo. There is an increased incidence of epilepsy. An important but especially rare variant of SPS is associated with breast or lung cancer. Characterized by the production of antibodies to amphiphysin, this variant of SPS has certain features that distinguish it from the more typical SPS with GAD antibodies.

> There are approximately 7,000 different types of rare diseases and disorders, with more being discovered each day.

> 30 million people in the United States are living with rare diseases. This equates to 1 in 10 Americans or 10% of the U.S. population.

> If all of the people with rare diseases lived in one country, it would be the world’s 3rd most populous country. In the United States, a condition is considered “rare” if it affects fewer than 200,000 persons combined in a particular rare disease group.

> Approximately 50% of the people affected by rare diseases are children.

> According to the Kakkis EveryLife Foundation, 95% of rare diseases have not one single FDA approved drug treatment. Approximately 50% of rare diseases do not have a disease specific foundation supporting or researching their rare disease

> During the first 25 years of the Orphan Drug Act (passed in 1983), only 326 new drugs were approved by the FDA and brought to market for all rare disease patients combined.

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"It is in moments of illness that we are compelled to recognize that we live not alone but chained to a creature of a different kingdom, whole worlds apart, who has no knowledge of us and by whom it is impossible to make ourselves understood: our body." ~ Marcel Proust

"I walk slowly, but I never walk backward." ~Abraham Lincoln

*Disclaimer. This is a personal website. I am not affiliated with any person, cause, charity, facility, or physician. I do not endorse any person, cause, charity, facility, physician, or treatment. The medical information on this website is taken from peer-reviewed documents. I am not qualified to give medical advice. The content of this website is original and from my own personal experiences. Any similarities are coincindental.